Patient Comments: Rheumatoid Arthritis - Experience

Please describe your experience with rheumatoid arthritis.

Comment from: Penny, 45-54 Female (Patient) Published: February 13

I have had RA for 11 years now. I have a positive RA blood work, but you can have RA with a negative blood. I have only had to use prednisone occasionally I avoid it because of side effects. I have taken methotrexate for 10 years; about 5 years ago I couldn't take it oral anymore because it gave me a GI bleed. But thank god it can be injected and this I do plus an injection of Embrel 40mg for the latest 6years. I think I am very good. I have difficulty working fulltime it positively exhausts me and I am awake all night in pain. Also a hot tub is a god send when pain pills won't cut it. I do take Vicodin for pain but I try to take it as little as possible and when nothing else will work. As you can tell by my typing I have had bilateral carpal tunnel repaired with fairly good results, also had Right great toe fused. Now my Right ankle swells constantly and I wear a brace but x-ray shows no joint damage. Any repetitive motion will escalate pain. I know I am very lucky as my husband is able to carry my insurance and support me. I have never done a diet, I suffer from depression due to low serotonin and can't stick to a diet. I find a good rheumatologist and staying as active as possible, like swimming or Tai chi is the best.

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Comment from: Judith, 45-54 Male (Patient) Published: December 05

I have had Rheumatoid Arthritis for about 26 years now!! When I was first diagnosed when I was a healthy 25 year old with two young children to look after. I worked part time in the evenings shelf filling in Sainsburys when one day I was filling up the freezers when I found that my right hand had seized up and I could not move it (which was quite frightening)but by the next day my hand was alright and functioning perfectly so I carried on my normal day to day activities. Two weeks later the same thing happened again but this time it was my knee and I found that I could not walk properly and so missed the bus home by this time I was getting really scared trying to think what was wrong with me. I went to the doctors had blood tests etc and then was sent to the hospital where my Rheumatoid Arthritis was diagnosed (but by the time i went to the hospital a lot more of my joints were affected. I have had many treatments since my arthritis was diagnosed and now have been fortunate enough to be put on a relatively new drug Infliximab (Remicade) which I have to have done by infusion at the hospital every 8 weeks.

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Comment from: 35-44 Female (Patient) Published: December 02

My journey with all of this has started fairly suddenly-swollen hands and joint pain. Now I am taking 30 mg of Prednisone and day and I am up to Hydrocodone for pain four times a day. I will not see a Rheumatologist for 2 more months but the steroids are awful and I feel bad all the time it seems. I feel as if I have no control anymore and I am very scared. I have no one to pick up and take care of me if I cannot work and my job is physically demanding and stressful, which I cannot seem to handle as well anymore.

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Comment from: Njbestmove, 55-64 Female (Patient) Published: October 19

I was diagnosed with RA in my late twenties. After a lot of pain, I found a lifesaving doctor in NYC who put me on water based gold shots, along with aspirin therapy. I went into total remission for about 25 years. It was a miracle. Then, after losing my Mom, I regressed and my arthritis flared up pretty badly. I stayed on high doses of aspirin -- up to 18 pills -- some days and that helped for a while. Then I felt a slight stomach upset and realized that I had to get off aspirin. I've been on Cortisone (Medrol) for a little over 2 years now. I was fortunate to have great relief -- initially on 1/4 to 1/2 a 4 mg pill daily. I'm now up to 1 pill and I can tell it's not working as effectively as it did. I tried Enbrel for a few months, Arava and recently cuprimine. While they have helped others, they only made me worse when I tried them 2 years ago and cuprimine mist recently. My doctor now wants to put me back on gold shots at age 61. Does anyone have experience with stopping gold for 25 years then starting up again? My doctor feels this could provide up to 75% relief. By the way, yoga, juicing green vegetables, a mainly vegetarian diet, and most recently cod liver oil, have been a big help!

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Comment from: Mominpain, 25-34 Female (Patient) Published: October 13

After having my now 3 year old daughter, I started having horrible pain. Doctor after doctor made me feel like I was losing my mind. About 8mo ago I was diagnosed with fibromyalgia, but it just didn't seem right. I finally saw a new dr that spent 1 1/2 hours with me going over everything, did a lot of blood work, and 2 month ago was diagnosed with rheumatoid arthritis. Both shock and relief to finally know it wasn't all in my head! I just started methotrexate, my goal is to run and play with my 5 and 3 year old! I miss it so much I cry myself to sleep. I'm supposed to be enjoying these years with my young children and it's very hard to put on a happy face when you're cringing in pain playing with your kids!

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Patient Comments

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Rheumatoid Arthritis - Early Symptoms Question: What were your symptoms at the onset of your rheumatoid arthritis?
Rheumatoid Arthritis - Treatments Question: What treatments have been effective for your rheumatoid arthritis?
Rheumatoid Arthritis - Prognosis Question: What's the prognosis for your rheumatoid arthritis?
Rheumatoid Arthritis - Diet Question: Discuss the diet or other lifestyle changes you've made to relieve symptoms of RA.
Rheumatoid Arthritis - Diagnosis Question: What led to your rheumatoid arthritis diagnosis?

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